One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome

Big Theory

It could explain the Chronic Fatigue Initiatives pathogen study results. It could show how an infection could cause chronic fatigue syndrome, and then seemingly disappear. It integrates two of the biggest players in ME/CFS; the autonomic nervous system and the immune system. It focuses on the herpesviruses. It includes sensory nerves, an increasingly hot topic in ME/CFS/FM, and it follows an established model of fibromyalgia.

If it’s correct VanElzakker’s hypothesis could explain a lot about chronic fatigue syndrome

Created by Michael VanElzakker, a Tufts neuroscientist, the VNIH proposes that nerve loving viruses trigger a difficult to detect immune response which produces the fatigue and other symptoms present in chronic fatigue syndrome.

Location, Location, Location

VanElzakker proposes that an infection triggers ME/CFS, but if his theory is right the most important thing about that infection is not what it is but where it is. That ‘where’ is the biggest nerve in the body; the vagus nerve – a ‘wandering nerve’ that stretches over much of our torso and sends its roots into most of the organs of the body.

The vagus nerve isn’t just any nerve; it’s the nervous system’s immune conduit to the brain. VE believes that an infection there doesn’t need to be large to cause havoc in the brain; it just needs to be present.

In some ways, vagus nerve appears, in fact, to be ripe for infection in ME/CFS. As it ‘wanders’ through the body it comes into contact with virus havens such as the esophagus, stomach, lungs and spleen, all of which have likely at one time or another harbored the herpesviruses (HHV6, HHV-5 [cytomegalovirus], HHV-4 [Epstein-Barr virus]) that have been thought to be associated with ME/CFS for decades.

Most humans carry several of these herpesviruses in latent form unless some stressor or biological event allows them to become reactivated.

VanElzakker believes that upon reactivation these viruses replicate and move outside the nerves where they run into glial cells that attempt to gobble them up. The glial cells perk up remarkably in the presence of viruses, releasing all manner of pro-inflammatory and neuroexcitatory compounds (proinflammatory cytokines [IL-1B, IL-6, TNF-a], glutamate, prostaglandins, nitric oxide and free radicals. )

Receptors on the vagus nerve that sniff out these alarm signals tell the brain an infection is present, which then shuts the body down by sending out signals (fatigue, flu-like symptoms, pain, etc.) that slow the body down, tell it to stop moving, stop eating, stop thinking.

Because these infections are localized right on the main immune conduit to the brain, VanElzakker believes they don’t need to produce the outsized cytokine response researchers have been looking for. All they need to do is tweak the vagus nerve and let it and the brain the do the rest.

You don’t need a ‘big’ infection to produce ME/CFS; all you need is a little infection in the right place.

The Key Component – Glial Cells

The glial cells that surround and protect the vagus nerve are the key. Once thought to be mere structural scaffolding for the nerves, these cells (e.g., astrocytes) are now known to regulate nervous system signaling, a fact that’s been borne out in chronic fatigue syndrome’s sister disease, fibromyalgia.

VE believes pathogen triggered,but localized immune system activation around the vagus nerves may be causing ME/CFS

Glial cell release of cytokines, glutamate, free radicals, etc. in the dorsal horn of the spinal cord causes increased pain sensitivity and allodynia in susceptible individuals. At some point the constant production of these excitatory substances causes a switch to get flipped sending the pain response spiraling upwards instead of shutting down.

At its most extreme (allodynia), the nervous system can interpret even the slightest touch as eliciting pain. The pain response system at this point, as VanElzakker, puts it, has become, ‘pathological’.

That model of pain production has been solidly documented. VanElzakker proposes the same process causing pain sensitization in the dorsal horn is causing fatigue and other symptoms in chronic fatigue syndrome, except this time it’s associated with glial cells surrounding the vagus nerve.

A New Model of Fatigue

There is no reason to suspect that vagus-nerve associated glia would function any different than pain associated glia. VanElzakker

Nobody knows what a herpesvirus infection of the vagus nerve would look like, but VanElzakker doesn’t see any reason it should look any different from an infection in other parts of the body.

We know a herpesvirus infection of your trigeminal nerve gets you shingles and chronic pain. Researchers believe a chronic infection in the dorsal horn of your spinal cord will can get you fibromyalgia and allodynia. Would an infection of the vagus nerve get you sickness behavior and chronic fatigue syndrome?

There’s a good chance it might. Animal studies indicate that fatigue/flu-like symptoms go gangbusters when the vagus nerve gets infected. In fact, it’s possible the flu-like symptoms associated with infections wouldn’t even exist without the vagus nerve. Rodents with their vagus nerves cut don’t act sick even after they’ve been infected with a pathogen; the fevers, fatigue, the desire for isolation – are gone.

What if the vagus nerve receptors were…ceaselessly bombarded with these cytokines? The symptoms of sickness behavior would be severe and intractable.

If the glial cells surrounding the vagus nerve function the same way they do in the dorsal horn, a lingering or even a ‘smoldering’ infection (aka Dr. Lerner’s theory), could trigger the similar type of hypersensitive reaction in the vagus nerve. In this ‘immune sensitization’ model, it takes only very small amounts of cytokines to trigger fatigue and flu-like behavior.

In fact, VanElzakker suggests chronic fatigue syndrome and fibromyalgia could both be ‘glial cell diseases’.

How to Have an Infection That Doesn’t Show Up in the Blood

“Cytokines Responding to a Local Infection Stay Local” VanElzakker

If VanElzakker is right, the same group of viruses are wreaking havoc in different locations in different ME/CFS patients. The problem is it’s just darn hard to get at them. You can’t find them in the blood and you sure as heck can’t biopsy the vagus nerve.

A series of fascinating studies exploring how central nervous system infections cause chronic nerve pain may, however, illuminate what’s happening in ME/CFS. First, researchers mimicked a localized nervous system infection by dropping an HIV protein known to activate glial cells into rodents’ spinal cord.

The vagus nerve is the immune conduit to the brain; mice studies suggest it plays a key role in producing ‘sickness behavior’

They found that the glial cells reared up and starting producing pro-inflammatory cytokines to take care of the intruder. Not surprisingly, the rodents looked and acted sick – the cytokines were doing their job to keep the animal down and isolated – but no trace of those cytokines could be found in their bloodstream. Only if the animal’s spinal cord was sampled near where the ‘infection’ was it possible to find any evidence of increased cytokine levels.

If VanElzakker is right, then blood cytokine levels in ME/CFS are a function of where your vagus nerve is infected. If it’s infected in your abdominal area, you might find cytokines in the blood, but it might be hard to find them in your spinal fluid. If your vagus nerve is infected near your brainstem you might find cytokines in the spinal fluid, but you probably won’t find them in your blood.

Wherever the infection is there’s a good chance you may not find cytokines in the blood at all. This isn’t a completely surprising fact or even restricted to the vagus nerve infections; cytokines in mice with lung infections, for instance, showed up only when the lungs themselves were sampled.

Next Steps

VanElzakker suggests animal studies to better understand infections of the vagus nerve and to ultimately to build a chronic fatigue syndrome rodent model would be helpful. Magnetic resonance imaging (MRI) may be able to detect viral lesions in central nervous system tissues. It is not yet known if PET scans can detect the activation of a different type of glial cells; the satellite glia that are in vagus nerve ganglia and paraganglia, but special PET scans might be able to be used to assess microglial activation.

Cadaver studies of people who had ME/CFS definitely aren’t his first choice, but they could find activated glia, inflammation and viral infections of the vagus nerve and associated structures. Finally, novel protocols should be developed to assess the vagus nerve and brainstem functioning in ME/CFS. The severely ill should be given a prominent place in future studies.

If VanElzakker is correct different treatments could be in store for people with ME/CFS

A New Treatment Approach

Glial Cell Inhibitors

If VE’s theory is correct then glial cell inhibitors to stop the immune activation, antivirals to attack the pathogens, vagus nerve stimulation and surgical alteration of the vagus nerve might be possible treatments sometime in the future.

Glial cell inhibitors have a good safety profile, have been helpful at curbing neuropathic pain and are not used much in chronic fatigue syndrome or fibromyalgia.

If VanElzakker is right then Ibudilast, a drug in clinical trials now for another disorder, is a possibility.

Ibudilast (AV411/MN166), a drug used mostly in Japan, knocks down glial cell activation by inhibiting the production of a proflammatory cytokine called macrophage-migration-inhibitory factor (MIF) and TNF-a. Reduced levels of TNF-a could provide a bonus by increasing the breakdown of a excitatory neurotransmitter called glutamate that may be helping to keep your central nervous system on edge.

Ibudilast is also known to have neuroprotective and vasodilative effects and is usually used to treat asthma and stroke. It’s ability to suppress glial cell activation has made it useful in the treatment of neuropathic pain, and it’s currently undergoing clinical trials to treat neuropathic pain in Australia. Ibudilast can also prevent viral activation of the microglia.

Other general microglial inhibitors exist (minocyline, pentoxyfilline, propentfylline) but have undesirable side effects.

Antivirals

Stopping glial cell activation may be easier than getting at the viruses themselves. Herpesviruses living in the sensory ganglia may be protected from antiviral drugs and antibodies. (One new herpesvirus drug may be coming on the market soon, however.) Alternately, viruses other than the herpesviruses could be infecting the vagus nerve.

Behavioral Therapy

VanElzakker also notes that while behavioral therapies are not curative and may only apply to a subset of patients, they can help moderate symptoms and improve quality of life in some.

Conclusion

The VNIT may be able to explain more puzzling aspects of chronic fatigue syndrome than any other. Next up we talk with Dr. VanElzakker about how he got interested in ME/CFS and what his theory may mean for this disorder.

170 Comments

Gail Williamson

This is exciting news and FYI: here’s a tweet from VE – check out what he says on Aug. 10th: http://www.immunesystemmasterkey.com/basic/ – Says he is putting together a pilot study with Anthony Komaroff. VE also tweeted that the vagus nerve could be infected by a variety of things, not just viruses. It could be bacteria or mold and would explain why people under drastically different circumstances would be sick.

Any chance you could find out more about the pilot study?

Looking forward to a breakthrough in this area in 2014. I believe he’s on the right track! Maybe Simmaron would be interested in helping with the study?

Laura L

Lynne

Given the similarity in symptoms between those with ME/CFS, FMS and Lyme (and related bacterial/protozoal) infections, I’m with Gail here… study shouldn’t be limited to viral pathogens in the vagus nerve. Any source of inflammation/activation of the vagal glial cells might be causative if this theory holds up (see Mark’s comment as well).

Thanks for very interesting article, Cort!

barbara

And don’t forget about parasites. Dr Klinghardt and others have stated that 80% CFS’ers have the parasite c. pulmoni,
hidden lung worm, discovered by Dr Larry Klapowi. I strongly believe that I have this parasite. It’s thought to have been a bat parasite that jumped species when we bombed the hell out of VietNam, and it came to the US with returning vets. It is not contagious, but gets around via food and drink. It is so small it is almost invisible. There is much info re this on Google.

Catherine

Dr. Klinghardt believes a lot of things. His list of causes and treatments increases every year since he needs them to keep in business. Having said that, I do agree that parasites may be contributing to our illnesses, just not as per Klinghardt and his wacky, non-scientific ART testing system.

Leigh

I am sorry that you are so ignorant about pathogens. I personally have had my life saved by a doctor who does similar testing and treatment as Dr. Klinghardt here in Canada-the doctor saved my life. Another friend who has been sick for years was too complicated for this doctor so she went to Dr Klinghardt for treatment and for the first time in years she is getting better and has some energy to pay attention to her daughter. Conventional blood tests and the conventional sick care system have a lot of errors and vested interests directing it. My vitamins have not cost one life but every year 100, 000 people die in north america from taking prescribed medication. My brother and father didn’t get proper testing or treatment for Lyme disease and they died horrible deaths at premature ages. Dr. Klinghardt and other doctors warn of frying your mind/body on the Wifi but we still use our wifi and cordless and cellular phones that hurt us. More importantly doctor klinghardt did the studies that showed EMF’s increase the rate of replication of bacteria’s by 600 times. We ignore this to our peril too just look at our sick and fat and tired society all things have a cause! I have done the hard work of healing from many Lyme infections plus coinfections using alternative testing and treatments I am so glad to be alive to talk to you about it today to let you know that Dr. Klinghardt is one of the best doctors in North America for complicated and idiopthic diseases because nothing is idiopathic everything has a cause as to how it came to be. All the Best.

gary brookshire

July 28, 2016 at 1:48 am -

My son has a be\ad Lymes disuease infection. I am concerned that it is not getting nay better. I would approceate tlking to- you regardging hia case. thanks-

Patty

August 16, 2017 at 12:08 pm -

I would like to talk to you about the doctor you see in Canada who uses a similar approach to Dr. Klinghardt.

Catherine

September 22, 2017 at 4:30 am -

Leigh,

I’m sorry you make so many assumptions about what I believe. I didn’t say that natural medicine was bad, that vitamins were bad, or that standard naturopathic or integrative treatments or protocols were bad.

I said that Dr. Klinghardt’s ‘ART’ testing is a scam, and one that can be EASILY proven as such. A friend offered to pay for me to see his second in command, a well-known female doctor here in the Pacific Northwest. I took her up on her offer because I was desperate.

I remember walking home after being dropped off after the appointment. My friend had to get to work, so she dropped me off at the bottom of a hill where I could take the bus. It was a nice day so I walked past the bus stop, and to make a long story short, was feeling so good that I ended up walking almost 2 miles.

10 appointments and 2 and 1/2 years later, I could hardly walk 3-6 blocks 3 times a week, thanks to that ‘ART’ testing.

For those who may be interested in Klinghardt’s approach, I suggest you take a look at his website, his “Klinghardt Academy” where he makes all sorts of outlandish claims, and then proceed with extreme caution. You may just end up in a wheelchair, where I am now.

lisa

I had fibromyalgia for 12.5 years. It’s gone. I am left with the tingling activation of a virus in my spine area. It I take 2000-3000 mg of L-LYSINE, it goes dormant, starting within 30 minutes or so. If I do not take it every single day,, the virus flares my vagus. It starts in the center and flares up and down my spine and neck. I know that my fibromyalgia was an immune system response gone haywire. I did all kinds of things to learn what I know, including long term fasts. Now I know Arginine and stress and sunlight in my eyes will activate it. L-lysine shuts it up. You can get it at any drugstore, it is over yhe counter. Go get some relief.

Taking lysine as you describe, on an in-need basis, seems fine. Taking it preventively (all the time) I’ve read can cause kidney problems.

But thank you for the suggestion. I have herpes simplex 2 and get nerve pain, agitation, exhaustion, and flu feelings, so the vagus nerve infection theory would explain my personal experience to a tee. The yogis control their parasympathetic systems, which is what the vagus nerve is responsible for, with breathing and meditation. I believe my Silent Reflux was brought on by a herpes infection of the vagus nerve and am approaching the problem with many ways without drugs. This technique is meant to heal and stimulate the vagus nerve: https://eiriu-eolas.org/. I’ve just started, but would be interested in anyone’s thoughts on it.

Juy

Hi Lisa , my name is Judy and I have been sick for quite some time Years. Newly experience with Fibromyalgia this year. Are you really serious about L Lysine? Why don’t we are take it if Fibromyalgia symptoms and the Deep Pain go away. I would like to talk with you about this. I love in Maine my sister also has had Ft 15 plus years. Please reply .

Deb

Cort Johnson

Spamlet

Half a lifetime ago–before I even had my ME diagnosis–my attempts at explaining all my symptoms led me to suspect an infection of the vagus. I was, of course–and still am–laughed out of doctors’ surgeries and psychiatrists lairs, when I suggested that such things might be possible. It is good to read that it is now acceptable to entertain such theories!

Darlene

Carol Carlson

I didn’t have to read too far into the blog to realize that it all fits with the history and the present of my daughter’s suffering. She is a “perfect” example of what this disease is about, unfortunately. I strongly hope that Dr. VanElzakker’s scientific theory is proven to be based on solid fact. There are so many research projects going on around the world, focusing on an official diagnosis; however, it seems prudent to hope that Dr. VanElzakker has the correct answer. It was kind of scary to read his description of the source of the disease: it made so much sense to me, a lay person. Why can’t the research and medical experts realize what, it seems to me, to be there right in front of everyone’s nose?

Cort Johnson

One nice thing about VE’s hypothesis is how well he lays out. It has gotten a good response. Kristin Loomis (interview upcoming) of the HHV-6 Foundation loved it and hopefully it prompt some research efforts.

I think may fit in well with Pridgen’s theory of Fibromyalgia, by the way. I could be wrong, but I think Pridgen is looking at similar nerve ganglia in the gut.

Issie

EXCITING, hypothesis!!!! I hope more concrete research is done and treatment will be less hit and miss. A faulty immune system seems to continue to show up. If we could get the immune system to detect what shouldn’t be there and destroy it, we would be better off. My doc is using minocycline and doxycycline (as part of the treatment) with his patients. ( Depends on which pathogens are detected. ) It seems more doctors are on this path of treatment. So wonderful that some of us are getting good results from it.

Issie

est_sunshine

This rings true for me – I have POTS and I have palpitations which I thought were heart related and had a holter monitor which found nothing serious. I believe the palpitations are in fact an overstimulated vagus nerve firing off, as they feel like an electric jolt in the centre of my chest – they are worse after eating or with stomach gas or when changing positions – all of which would put pressure on the vagus nerve. I know lots of people have them but I also have cold sores, including one in my nose that has been there for 3+ months!! I hope the research continues to be fruitful.

Tracey

I am seeing people here dealing with the same thing I have been dealing with since March 2011. I need to be a part of and be aware so i can learn. I’m with someone else here who said sometimes they get to feeling like their next breath may be their last

See his (Matinez Lavin) kindle book FIBROMYALGIA. “How stress becomes real pain and what to do about” or “Fibromialgia” paperback Spanish edition .(both books in Amazon.com)

Martinez Lavin said there is Autonomic Nervous System Dysfunction in Fibromyalgia The sympathetic nervous system is overactive and the parasympathetic (read vagus nerve) is not acting..
We should add to this the results of Dr. Daniel Dantini “The new Fibromyalgia Remedy”, (book 2008, Amazon.com). Dantini assumes (and shows some analyses) there is a hidden infection and treat his patients with antiviral drugs (70% success)
We have the puzzles with almost all the pieces in!!!
Raquel from Brazil, sorry for my English, is not perfect!

Laura

would love to be part of this (am a patient); have had fm since 1996. I really resonated with so many things I read (weird hrv and metabolism, jaw misaligned from muscle spasms, hard to breathe, find I am often holding my breath? (Mom said I used to do that as a child until I would pass out??). Had FM pain during 90’s in neck and midback. Wonder about herpes connection as well; have been on acyclovir for over 10 years. Spine/Tailbone pain began in earnest in 2010 after doing some sound yoga. Wondered if had inadvertently awakened the Kundalini– maybe that is what FM is about. Feel like my body is being reconfigured.
somehow. On flip side I have new talents, very strange. Very painful. On Lyrica and Cymbalta for pain. Tougher during menstrual cycle (Cort!) and as I approach menopause. Wonder about Candida connection: itcy skin/esp tingling scalp, trouble with fungal infections (immune function: lichen planus on gums right around time tailbone pain began began in 2010. Discovered have inner ear issue, disolving of thin bone between inner ear and brain.
Cannot handle loud sounds, have had trouble with vertigo, balance issues. The list goes boringly on, sorry:) Hope this helps some brilliant doctor solve this problem, laura

Sue Mc

I have had CFS since 5-2010 & FM since 1-2011. I am at the point with my CFS that I require 12 hours of sleep to function for about 4-5 hrs & then nap 2-4 hrs. Eat, watch tv abit & back to sleep 12 hrs. The fibro affects my back, hips, knees & ankles. The pain was so great while sleeping? that I was hallucinating that mice were trying to eat their way out of my joints. Cymbalta gave me terrible dreams that would pause when I got up to pee & resume right where I left off, usually someone chasing me dream.
I read online that most everyone is deficient in magnesium & calcium, esp. people with arthritis. So I started to take 200mg Mag.oxide & 500mg Cal.citrate/carbonate AM & again PM. In about a weeks time fibro pain gone almost completely. Will flair up if I walk too much but 2 aspirins before bed & heating blanket kills the pain. I know it’s the magnesium that kills the pain, b/c once I had to stop my supplements for 2 wks. & I wound up in the ER thinking I was having a heart attack! The next morning after many tests all night & being on nitrogliserin, still in heart pain, 6 heart Drs. discharged me saying that I had fibro of the heart! Never heard of it, but my fibromyalgia Dr. said that it was b/c I had stopped supps. suddenly. It’s funny that the chewing pain in my joints didn’t come back as well. 3 days later after resuming my supps., heart pain was gone. Nitro didn’t even put a dent in the pain I was having.

Also have trouble breathing, stopping at night sleeping & gasping awake. Thought I was breathing with mouth open, so strapped my jaw tight & it still happened. Started CoQ10 200 mg 2x day. Breathing is easier now & have a little more energy now. So tired now, just wanted to share with you. I have 13 chronic illnesses, been sick since I was a kid, & am 65 yrs old. Rely on Jehovah the true living God, He will help you get through these trials. Love from Sue

Juy

Susan

This sounds like an exciting direction to be going in to me too. But one thing I don’t understand. If the elevated cytokines are only found near the site of the infection, how do they cause general sickness behavior? Wouldn’t they have to be in high enough levels in the circulation to affect the brain and how it is running the body? So then be detectable in blood samples? Or am I missing something here?
Susan J.

Cort Johnson

My understanding is that the cytokines trigger the vagus nerve to tell the brain an infection is present. It appears that the vague nerves is the main immune nervous system conduit to the brain. Instead of cytokines in the blood getting to the brain and telling it that an infection is present, nervous system signals from the vagus nerve go straight to the brain telling it the same thing. If that’s true all you need is a local chronic infection near the vagus nerve to cause sickness behavior.

I think VE’s suggestion that ME/CFS and FM could be disorders of the microglia is very interesting. Maybe the microglia are oversensitized to signs of infection or maybe they get damaged and keep pumping out cytokines…

Kathy R

This makes so much sense to me. I am compound heterozygous for MTHFR variants, so I got one from mother (1298) and one from father (677). Mother, in her old age, used to have vagus nerve attacks that mimicked heart attacks, but which would pass in a short time. Then she would be fine. She seemed to have chronic fatigue and FM all her life, especially when stressed out. I struggled along for decades, much like mother, until I finally got a CFS diagnosis. I hope this theory proves correct and that an effective treatment can be found. It will simplify things for the medical community and help many people.

Cort Johnson

Judy

Can I email this doctor who did this research? I was diagnosed with Fibromyalgia since 1991. This is the first time all of this made sense and actually seems like a possible answer to a lot of questions and help for my pain. Thank you.

Pat

Judy:
If you get anything information on fibromylgia could you please forward it to me I suffer from this, and I am in constant pain, I find the cold makes it worse. I would appreciate any information you get if you could pass it on to me.

Mark

I’m pretty convinced that he’s getting to the core problem but glial activation doesn’t require infection. Micro and macro glia respond to tissue injury also (whether mechanical, due to hypoxia or ischemia) and peripheral injuries can result in the same systemic glial neuroinflammation (as seen in complex regional pain syndrome). Small fibre polyneuropathy may be a similar driver in fibro.

So given the difficulties in confirming a vagal nerve infection I’d prefer them to go after the neuronflammation. as you know one (unpublished) study appears to confirm microglial activation in ME/CFS using PET but there are also metabolic markers and Peterson’s CSF samples could well be ‘gold dust’.

PS – Low dose Naltraxone is another glial inhibitor.

Exciting stuff all round though which begs the question of what exactly Lipkin found in the CSF samples?

TheGodofPleasure

I would be very interested to see how this hypothesis fits with those people who respond to Rituximab (if at all.)
Maybe they represent what is currently considered to be a sub-group, but who actually have a completely different pathology, (i.e. a B cell infection) and yet one which yields very similar symptoms.

Kathy M

I understand how the ‘sickness behavior’ could occur, especially with POTS and post exertional malaise, but does this theory address the immune problems resulting in actual sickness that so many CFS patients have? My initial symptoms were many, many colds, sinus infections, and very low B cells. My colds were contagious, not ‘sickness behavior’. Does sickness behavior cause immune suppression?

Cort Johnson

In VE’s model an initial infection or viral reactivation (or bacterial infection or mold) triggers everything; the problem I believe is that the infection got to your vagus nerve and it settled in there – and never stopped. The infection continues – it keeps tweaking the microglial cells – which pump out the cytokines which trigger the vagus nerve to tell the brain to produce sickness behavior. I think he’s more focused on microglial inhibitors because he thinks its easier to stop the microglial activation than get at the infection.

I suppose it is possible, though, that the microglia are keeping the infection down…In that case, I don’t know if you’d want to shut them off (???)

Issie

In addition to POTS, MCAS and EDS I also have Hypogammaglobulinemia – which is low IGG levels and supposedly it would be hard for me to fight off infections. I seldom get sick (colds, flu, etc.) But, interestingly -have autoimmune diseases where my body attacks itself. (Vitiligo, allopecia, etc.) So, you can have both things going on.

With me there was found a protozoa (FL1953) and a co-infection related to Lyme. Treating this and addressing my immune system and inflammation has been a HUGE help for me. Much inmprovement over the last year. It’s not a quick fix thing, takes time. But the end results are what matter and I’m so much better than I was.

Albert

I wonder if the CFS/ME scientific community has also embraced (or at least considered) the possibility of “altered ganglionic function” as a subset or a main reason of autonomic nervous system dysfunction. The possibility that this “alteration” being the result of latent-residing, neurotropic Herpesviruses. The basis for my curiosity goes back to the recent study that proved direct causality of gut dysmotility (weakened strength of involuntary gut muscle) following primary infection of Herpes Simplex infection in gastrointestinal tract of rat: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0072648

The presumption here is that primary infection within the gut would subsequently have the virus travel up the Vegus nerve or establish latent infection in the associated Ganglion — Messenteric Ganglion or Celiac Ganglion.

Albert

The scary part about any infection by Herpesviruses is that the virus has the potential to reside in ANY ganglion. And if dysmotility is truly a hallmark of latent infection, i wonder what omnipresent ganglionic infection would cause in our body. Would humans continue to experience autonomic dysfunction regardless of persistent infection?

Albert

Imagine if the medical and science community proved that latent infection was the cause of a specific syndrome, e.g. Celiac infection of VZV or HSV was the cause of Irritable Bowel Syndrome. I would hope that the same theory would be applied to just about every other “random” experience: random elevated heart rate, random asthmatic attacks, Acid Reflux Disease, Diahrea, Swallowing Difficulties, etc. In fact, my belief on Acid Reflux disease is that the underlying cause is a disturbance of outside pathology or autonomic dysfunction not associated with latent infection. Acid Reflux just doesn’t come randomly…

I offer this analogy: imagine riding a bicycle, and each pedal isn’t tight and snug, but loose and wobbly. Try pedaling. You’ll notice that the ability to transfer energy from you to the wheels, and to ultimately move the bicycle is ultimately disrupted. Our brains transfer electrical signals and other “stuff” (hormone, and probably things I have never heard of) to your muscles and organs THROUGH the ganglion. Ganglions are essentially conduits, or interfaces. Interfere with those interfaces, and you may have something similar to the bicycle analogy I gave above, or something like Irritable Bowel Syndrome…

Albert

I want to add another thing: given the subject of a single nerve being infected, imagine Herpes infection in any of the organs within the lungs — airway, alveolars, broncheal tubes, etc. In a situation with persistent infection, and a dysfunctional immune system, the viruses will simply continue to infect and spread, claiming cell upon cell upon cell, until those cells are destroyed, causing necrosis. Now, there are case studies that demonstrate Herpes Simplex to be associated with Idiopathic Pulmonary Fibrosis: one of the most devastating and insidious diseases known to man. All it takes is someone who is suffering one of these automimmune diseases, and somehow getting the virus into the airways. Perhaps by accidental inhalation of HSV-containing saliva. http://jcm.asm.org/content/41/6/2633.full

Definitely don’t wish this disease upon anyone, but it is simply another example of the endless number of organs or tissue that these viruses can infect, and cause persistent problems.

Cort Johnson

Glial cell involvement is certainly not a new theory, we discuss it in our BIG book, but to see this follow up, to see scientists getting excited and carrying past research into the present is encouraging. It is especially helpful for future generations. My own children are starting to show signs of living with these horrible disorders. Your blog has been particularly helpful on a personal level. Thank you Cort.

Cort Johnson

Aravir

I remember I read on a Betterhealthguy webpage that Klinghardt said CFS of unknown causes is probably Lyme. Before that I spoke to a Lyme patient and she kept telling me that my CFS symptoms were Lyme so I started googling and I found that website. I guess it doesn’t matter the type of infection, what it matters is that it affects the vagus nerve.

Janet Comerford

Any serious research into ME/CFS/FM is always welcome news – however… I don’t see how this hypothesis can explain the numerous occasions where a large number of people have developed ME at the same time?

Cort Johnson

I think it could actually. It would just take a bug that was quite virulent and that happened, perhaps because of genetic susceptibility or because they were under stress, to get further into the body (I assume) than normal. One of the nice things about VE’s hypothesis is that its kind of agnostic towards what kind of pathogen is present; it simply requires one to start the process off. Herpesviruses are the most obvious suspects because we know that they take up residence in those sites anyway.

Ros

Yes! Yes! Yes! l have been on this for some time in my own trying to get some one to talk to about this.
l am just so happy to see this can not read it all now but l feel this is so key. It also explains my eye problem and not being able to read very much, and the viral feeling in my optic nerve. l believe that the virus has not gone as my CT scan showed a UBO in the mid brain.
Happy is not the enough to express how l feel.
Thankyou to all. May this next year be a very promising one indeed. Happy New Year XXX

floydguy

Interesting hypothesis. Unfortunately, we appear to have another researcher completely ignorant of the day to day interactions patients have with the medical delivery industry. He seems to be quite taken with the idea that CBT and GET can be very helpful to 30% of the patient population. He doesn’t seem to understand that most clinicians believe CBT and GET to be curative NOT complementary. He seems to have a better grasp of infectious diseases and immunology than the shenanigans occurring in his own field in regards to ME [from his research paper]:

“Patients should be helped to understand that this is not the case and that resistance to psycho- logical and behavioral intervention is misguided. Both cognitive behavioral therapy and graded exercise therapy have been shown in a randomized trial to be helpful for approximately 30% of indi- viduals with CFS [137]. While these effects were moderate, the fact that 30% of patients significantly improved from psychological and behavioral interventions – without any drugs or surgery – should not be ignored.

There are two reasons that both psychological and behavioral interventions should be strongly recommended, along with the treatment options discussed above, to individuals with CFS….”

As if….

Cort Johnson

Even patients surveys show CBT is helpful in about 30 percent of patients. Other people get benefits from meditation, Amygdala, etc. I think you added the ‘very helpful’ part as well. Your quote says the effects were ‘moderate’ and they affected about 30% of the patients. That’s a pretty moderate statement in my view and doesn’t affect his main thesis at all – which is that an ongoing infection of the spinal cord causes ME/CFS. He’s not calling for more CBT studies; he’s calling for better imaging, etc. studies and developing animal models and those are the kinds of things that this paper will spark.

floydguy

No, I am not missing his point which I think is very positive. You seem to be missing the point that he doesn’t recognize that many clinicians think that “CFS” is a psychological condition and can be CURED by CBT & GET. Do you not think there is harm in telling patients that they can be cured by these therapies? I am for anything that brings relief to people – including CBT, GET or listening to TV static; whatever works for individual circumstances.

He did state: “30% of patients significantly improved from psychological and behavioral interventions – without any drugs or surgery – should not be ignored.” I am not sure how you can have a moderate effect and at the same time significantly improve. Which is it?

It’s too bad he had to sully an otherwise interesting paper on glowing references to the PACE trial that folks on PR have done a good job deconstructing.

Valerie

Cort, I wonder how Enteroviruses fit in with this theory? Dr. Chia’s work – the biopsies he has studied of the parietal cells of the stomach (which I was extremely positive on) seems like it could relate to the vagus nerve easily since it seems to be everywhere else in the body in his research. I also have high antibodies for at least three forms of enterovirus including a couple Coxsackie viruses, in lab findings from ARUP Labs in Utah. I don’t hear enough about his work and the relationship to these theories and I don’t understand why. Even Dr. Lipkin did not talk about this type of biopsy looking for viruses in his last report of his testings and findings. All I remember is that when I got a stomach flu, it affected my brain and whole system in days. I could track it.

Deb

Donna

I was diagnosed with Gastroparesis after having CFS. I believe the Vagus Nerve is at risk at being damaged permanently from having CFS on any patient with the disease. This disease damages more and more that is just starting to be discovered. I think more will come to be known in the future. Having Gastroparesis has been a very difficult challenge along with all the other symptoms of CFS/ME.

Dona

I too have been told I have gastroparesis…. I got this diagnosis after I had my gallbladder removed ( a mistake on my part for not following through on my end and just believing the doctor when he said it needed to come out, still not sure why) but afer that surgery, I became VERY ill. I had a throat scope (EKG?) and the GI said my stomach was FULL of food, and I had barely eaten in at least a month. She said since I’m not diabetic, my vagus nerve had been nicked during surgery. Yet of course NO tests were mentioned to show this, and I’ve been on the “vagus nerve” information search for over a year, meanwhile declining in health. I’ve lost 50 lbs, down to 101. I’m SURE I have vagus nerve damage due to something gone wrong during surgery… I’ve see many others post the same thing, GP after a surgery, gall bladder removal included. How can I find out more info on this? I just want to get better! But NO doctor will help me or discuss the vegus nerve. I’d appreciate any advice or more links to help me on my endless, tiring search..

Jan

I have gastroparesis, too (for about the last 18 months, diagnosed, but had symptoms much longer). I don’t have CFS/ME, but I do have hypersomnia, and saw a link to this post and was curious because of my constant fatigue, even though it is different diagnostically from your illness. There is no cure for gastroparesis, and in my experience, most gastroenterologists are not very knowledgeable, unless they specialize in motility disorders (mine does not). I have learned a lot from support groups on Facebook, such as taking digestive enzymes, when to utilize liquid meal replacements, what foods to avoid, helpful websites, etc. I still have flares, but it has been much better lately than when I first diagnosed. My doctor really was of no help. Luckily, I have realized that it could be much worse, but I think I’ve learned to minimize the effects even more. It is possible that your gastroparesis is idiopathic — that is, from an unknown cause. That’s how we’re classifying mine for now (though I pushed to investigate dysautonomia, the doctor brushed me off). The important part is learning to manage the symptoms anyway. The Facebook groups are very supportive, even if a little inconsistent (the administrators get sick, too, and can’t always post every day). Just wanted to make you aware, and let you know there are kindred souls out there! 🙂 There are some CFS/ME folks in our Major Somnolence Disorder support group, too if you’re looking for fellow sleepyheads, although most there have a hypersomnia or narcolepsy diagnosis! I do hope you find a way to manage your symptoms and feel better. It’s a hard illness to deal with, especially when you’re battling with other ones, too.

barbara

Look into the possibility that you guys may have a parasite. Some parasites cause symptoms that are the same as gastroparesis. If your parasite/s is located in the stomach, digestive, there are many parasite cleanses that could work
for you. US doctors know next to nothing about parasites and many parasites don’t show up in blood or feces. If a lab says you test negative, all clear, it doesn’t mean that you are.

Brianna

Daughter age 8 diagnosed with cyclic vomiting syndrome. She also ha 2 seizures. Age 12 started having migraines and neurocardiogenic syncope (fainting). Age 14 acid reflux. Age 16 fibromyalgia and chronic fatigue. Age 19 grand mal seizures and memory loss. Age 20 mesialtemporal schlorosis. She is in severe pain, vomits, sleeps a lot or not at all, she can’t remember things, and she feels as if she is going to faint and sometimes does on a daily basis. All that we have been told by Drs and the research I have conducted her whole life has stemmed from the vagal nerve. She is in great need of someone to do something to help her!

william

Sandra

Hi Cort – from the UK
My Husband Dave has just been diagnosed with CFS/ME and whilst researching I came across your article, which is very interesting and make sense when there is so much conflicting information relating to this debilitating condition out there.
I would like to ask you or anyone out there if you think that been over exposed to diesel fumes -working in the construction industry for nearly 3 years delivering millions of litres without any protection- could have impaired the immune system and lead to this condition ? After working this job for around 4 months Dave developed daily headaches and lived on painkillers, then after around 6 or 7 months he contacted the worse bout of flu ever and still kept on working. after around a year of exposure we went on holiday and he spent most of the 2 weeks in bed weak and wiped out – which we put down to over working – this happened over the next 3 holidays we had ,he also started getting regular and more severe ear, sinus and throat infections- along with dizziness, so since being in that job from 2009 until 2012 here we are 2014 with a diagnosis of CFS/ME- any comments/feedback much appreciated. Thank you

Ann

Sandra In 1978 I was diagnosed with Multiple Chemical Sensitivity. I have tried to avoid chemicals as much as possible.Has helped as well as watching foods. Have been getting physicalm therapy treatments off and on for about 25 years. But still do not feel well. I believe that there is a problem with the Vegas nerve. Check out some of the sites about chemical sensitivity, I don’t feel that I am at the bottom of my problem yet, but some relief is better than none

Dawn

Sounds like it could be a virus hiding out which gets triggered. There are herbals to kill these viruses such as EBV, strep, and others. Some of them include cat’s claw, lemon balm, licorice root, silver hydrosol, monolaurin, star anise. The book “Medical Medium” by Anthony William (sold on Amazon) outlines the herbs and supplements to recover from the chronic infections often associated with the triggered viruses which hide out in our bodies and vital organs ready to surface at a later time when triggered. Diet is key, as well. It’s working for me, finally. Good luck!

Dawn

Sounds like it could be a virus hiding out which gets triggered. There are herbals to kill these viruses such as EBV, strep, and others. Some of them include cat’s claw, lemon balm, licorice root, silver hydrosol, monolaurin, star anise. The book “Medical Medium” by Anthony William (sold on Amazon) outlines the herbs and supplements to recover from the chronic infections often associated with the triggered viruses which hide out in our bodies and vital organs ready to surface at a later time. Diet is key to healing, as well. It’s working for me, finally. Good luck!

Lisa Griffiths

SOOO interesting. I just found this after suffering a really weird reaction post-training session and then having my osteopath saying that she suspected a trapped vagus nerve. I had the eye pain, the head pain and the indescribable but undoubtedly strange feeling that something was very wrong – I actually passed out for an hour on the floor after stretching. Within minutes of being manipulated, the symptoms eased off really quickly.

In addition, what is your opinion about POTS being related to this? There is an explosion of cases of this syndrome across the Western world, and nobody knows how to treat it. And yet, this hypothesis makes such sense, as the symptom pictures seem extraordinarily similar. I would welcome a further discussion on this. Thanks for the article.

Cort Johnson

Ara

For many years Steven Rochlitz Phd has suggested that an irritation to the Vagus nerve caused by an undiagnosed hiatal hernia is what is making many people chronically unwell. He does not agree with the vagus nerve infection theory. You can find the info in his book Hiatal Hernia Syndrome/Vagus Nerve Imbalance

Ara

Thank you Cort. I spoke with Dr. Rochlitz and he had a chance to clarify some things for me.
Prof. Steven Rochlitz’ work actually makes clear that (usually hidden) porphyria [it is not a rare disease] is the ultimate cause of vagus nerve imbalance—not just the hiatal hernia syndrome. His book, PORPHYRIA: The Ultimate Cause of Common, Chronic, & Environmental Illnesses cites autopsies on people unknown during their lifetimes to have had porphyria. In some cases, the vagus nerve was even found to be demyelinated.

After having read Prof. Rochlitz’ books, I’d suggest to you, to check them out or at least the one I just cited. It has many other little known factors, besides porphyria that can cause CFS or M.E. or just go to the testimonials page at his site wellatlast . com and see what many physicians and laypeople said after reading it. Be well.

Brahms

Strongly agree with this. This is it. My hypothesis is anything that causes inflammation on the vagus nerve will cause CFS. Infection, nearby infection, pinched vagus nerve. How the symptom appear — whether slowly or suddenly — is another clue that can possibly lead to the causes diagnosis.

Ruth

I am relieved to find others who are experiencing, and working on understanding, the same difficulties I am. I have been diagnosed with CFS, Fibro, Sjogren’s, accompanied by IBS and a host of other alphabet soup labels. I am so tired of being exhausted, of having painful attacks involving my heart area that suggest that my next breath will be my last. I am having an attack as I type and have nothing but Clonazepam 0.25 to manage it. I have been to the Emergency Room on numerous occasions believing that I was dying. The last time I arrived with a bp of 113/70. I think the doc wanted to admit me to the Psych ward. I have had a barrage of cardiac studies excluding catheterization. They found nothing. I would need a dictionary to understand all of what you are describing about the research etc. But what I can understand in symptom descriptions says I have found the right place. I plan to watch this conversation intently. Please, if there are any known resources or specialists known in South Central Pennsylvania I would appreciate the input.

Cort Johnson

Diana

I had heart pain also, even with a perfect catheterization. I had a cold sore and my dermatologist prescribed a large dose of Valtrex. I improved so much! This is the first web site I’ve found that has come close to explaining why Valtrex made a coronary spasm better. (I went to the E.R. often also. I went from cardiologist to cardiologist. I was put on antidepressants and was even given a book on marriage!) I think there may be something to this theory.

Don Sorenson

I have a similar story. Multiple trips to the ER, doctors and specialists of all kinds with no benefit for nearly four years, and was getting steadily worse. That is until my sister, who unbeknownst to me, was dealing with a similar problem in her neck and face, was put on Veltrex by her dentist. Which dramatically helped her condition so she suggested that I try either Veltrex or Acyclovir. Sure enough, after literally begging a doctor to give me an Acyclovir prescription it made a huge difference and I’ve been taking it daily now for 10 years.

Subsequently I’ve found that during an outbreak (this stuff occasionally gets worse, particularly during periods of high stress) combining Benadryl with Acyclovir amplifies Acyclovir’s benefit by a factor of 2 or 3. So you may want to keep that in mind the next time you might have a surge in virus symptoms.

Don

Just adding a comment that might be useful for individuals that by whatever means have established that their CFS symptoms are due to a herpes infection of the vagus nerve. I’ve struggled for the past 15 years with periodic herpes outbreaks in my left vagus nerve system along with the usual extensive array of uncorrelated and potentially debilitating symptoms all down the interior left side of my body. However, for myself, I have learned how to effectively manage the problem.

I take a daily dose of acyclovir which I’ve found minimizes the severity and frequency of the virus outbreaks. When an outbreak does begin (they still do occur) I double acyclovir dose to two/day and add one Benadryl (diphenhydramine) tablet to each acyclovir dose. For me the Benadryl reduces the secondary symptoms and appears to significantly enhance the effectiveness of the acyclovir. Base on the research discussed here the antihistamine may be inhibiting the glial cell response to the virus which in turn reduces the vagus nerve illness signaling (strange symptoms) and inflammation adjacent to the nerve cells. The reduced inflammation may then allow easier access to the interior of the cell by the acyclovir improving its effectiveness.

I’m hoping this might help someone else who is struggling with related problems, I know it can be very difficult to deal with. This combination/technique has definitely worked for me, is easy to follow, and it would seem that this recent research may explain why it has been effective.

Diana

This is similar to the regimen I follow for coronary spasm, esophageal spasm, and gallbladder spasm. I have a strange problem that doctors couldn’t solve. I just happened to take my son to the dermatologist and she noticed a cold sore. She prescribed large dose of valacylovir and it gave me my life back! Now I take a daily regimen and sometimes my body becomes overtaken by the virus and a daily regimen isn’t enough to hold the virus at bay so I take a larger dose again. This seems to happen every few weeks. If I don’t take the medicine my symptoms come back with a vengeance. Angina, gallbladder attacks, esophageal spasms, difficulty swallowing, etc.. This web site is the first I’ve come across that might explain why Valtrex helped me.

Rhonda

Pretty exciting. I think someone’s finally on the right track. It’s the only thing that’s made sense to me. Something that popped out at me above when speaking about Ibudilast, he mentioned it “increasing the breakdown of excitatory neurotransmitter glutamate that may be helping to keep your central nervous system on edge”. Isn’t this like the flavor enhancer Monosodium Glutamate (MSG) found in so many of our foods? I feel so much worse and nerves on edge when I consume it.

Mike

All of this is very interesting. When I got shingles 20 years ago, it was concentrated in the middle of my back. A couple months ago, a blister reappeared at the old Shingles site, and now the spot is numb to the touch. I have a family history of heart disease, Left Branch Bundle Block, and my Left Ventricle Ejection Fraction is in the mid 30’s% (but clean heart arteries); and recently, when the blister reappeared, I started to have shortness of breath. Anybody seen any research or literature that deals with the possibility of a shingles infection of the vagus nerve that could result in or exacerbate heart and breathing issues?

Cort Johnson

I don’t know but I wouldn’t know. I do know that the autonomic nervous controls some aspects of heart functioning. Can you get in touch with a dysautonomia expert? (Dysautonomia International has a list.)

kyle

Thank you for this very interesting article on the research and I think it’s definitely on to something. I had been diagnosed with CFS and other “diseases” including lupus and MS before a final and conclusive diagnosis and aggressive yet successful treatment of Lyme disease. In chronic lyme, the central nervous system is infected, pretty much 90% of the time at least. This is obviously a bacterial etiology but often virus’s are confections in chronic and acute Lyme disease. I am very skeptical of any treatment that would inhibit an immune response from the glial cells, because although it could suppress symptoms initially it could make the cause of the symptoms (cns infection) worse. However the supposition to use antivirals is a good one.

baype

Tooth nerve may also count on this case. I had huge cavity on the side of my wisdom tooth which was suddenly became painful after quitting smoking. On emergency, the dentist deaden the nerve of the tooth, for further extraction. Due to several unavoidable reasons, I did not immediately extract it. 3 weeks passed by, I started getting depression and progressively become symptoms that really resembles CFS. I was getting even getting intestinal candidiasis afterwards, which its treatment only delays the extraction. Last week finally the tooth was extracted, and on the same day I’ve noticed huge relieve on mood and the number of hours needed for sleeping.

My wife got an “autonomic system reboot” for her MS like symptoms. A playlist called Jade’s autonomic system reboot on youtube. She got venoplasty of the renal, jugular and azagos veins and the idea was to shake up the vagus nerve and wake it up. It was remarkable. Next day her balance was fantastic, she could pee like a horse, first time she used the bathroom properly in years, her right side felt normal again, warm, not cold like a dead person. and brain fog was gone. Remarkable thing, the vagus nerve. I did before and after videos, the differences are very clear. AND she got back reflexes in the bottom of her foot. I had hoped for “something” but we got a miracle. Brian

LindaG

Very interesting, Brian White, thanks !! I have always been convinced that the vascular was for much in ME .. And my stage of ME, it is more than belief is obvious … Glad for Jane, I ‘hope that ME researchers will look increasingly on vascular disease in ME!

Sandy

I have Extra Esophageal reflux disease due to a hiatus hernia. It is silent reflux- no heartburn. I have developed headaches mostly occurring at night when I lay down. Over many years the head pain has become more frequent, now almost every night and not just night. The internet has suggested that pooling of reflux on the vagus nerve is irritated it and causing radiating pain to the top of my head. I have lost weight, changed what and when I eat and have recently started trying to sleep sitting up. Might be helping…but not there yet. My GP said he finally believes there is a correlation between my reflux and the headaches and my specialist warned me that some of his other patients have complained of headaches which is called a complication of reflux but not sure how or why or what to do about it. Pain killers do not touch it. Only thing that helps is ice. Is this really a vagas nerve complication and can it really help to sleep upright? This blog is very interesting and potentially helpful. Thank you.

Cort Johnson

Brahms

The reason I asked is, I think I cured my 4 months of CFS by tooth extraction. Actually I never heard about CFS before, up until tooth extraction cured my unexplained fatigue along with other symptoms that I’ve never felt before in my life, as a healthy 34 years old male. I was the one previously posting about tooth issue of mine relating to the fatigue, as “baype”.

Now immediately after the extraction, I kept finding out what happened to me in the past. I can only find some post in curezone saying his root canaled tooth extraction cured his chronic fatigue. And I found this research. but I don’t really understand the relation of teeth and vagus nerve at that time, until several days ago I’ve found research about “Toothache referred from heart disease and lung cancer via the vagus nerve”. Now that really rings a bell as it suggests that vagus nerve does indeed connects to tooth.

As I posted before, 3-4 weeks after the initial problem, in which my tooth pain nerve has been deadened, it started very gradually with depression. I also noticed dark circles under my eyes. It was not a sad feeling, it’s more like a feeling to stay at home and lots of sleep, to do nothing, and be unproductive. I didn’t even cared about my previous hobby that I really liked, prior this condition. And at that time I was starting to have unrefreshing sleep 9-12 hours a day, waking up with body aches and joint stiffness. Lots of times I was chilling by 2-3 AM during sleep. I never had this and attributes it to the quitting smoking I started 4 months ago. I do remembered that the quitting had some depression symptoms during the 5-6th week. However, I vaguely remembered that depression has already subsided. But, as psychologically I don’t feel I’m sick, I still strongly thought it was the quitting. So I did some bout of exercises to improve my mood. It was my regular exercise since years ago, not a heavy one, and never had any effects from it. I was amazed at that time on how my mood was swinging like crazy, I was very happy and had some energy after the first exercise. However, the day after I was feeling sick and all my body aches. I think it might be because I haven’t exercised for some weeks. So I did the exercise again the day after, and the day afterwards. During the 3rd exercise session, I was running out of energy mid-session. I can’t finish it because I don’t even have the energy to move my arms, so I stopped. The day after I had a low grade fever during a walk in the mall, for like 4-5 hours in which it subsides by its own. At that point of time, I can really feel that my brain was very sensitive to stimulants, coffee, music, even carrot juice can, unreliably, lift my mood extraordinarily at times.

2 weeks afterwards, there was no improvement. So in an evening, I thought I had enough, and start rolling back everything that I did since the past 6 months. I decided to quit the smoking cessation. I thought where was no point of quitting if it makes me felt like crap, but let’s just limit the intake to 4-5 cigarettes a day. After the first cigarette, I found the healthy feeling I missed since months ago. However, after the second cigarette, I get heart palpitations. After 4 days of smoking, the MAOI antidepressant from cigarette kicked in. I can do all stuff, I can stay up late up till 10 PM, I can do lots stuff, my sleep time was reduced by 1-2 hours. Problem solved. However, I still have the muscle aches at times, especially when waking up in the morning. Fast forward 3 weeks, my lower abdomen got distended suddenly after skipping dinner. There was also weird sensation of numbness in the abdomen and very cold stomach. No pain, just a bit of discomfort. This is where I started going to the doctor. The first doctor misdiagnosed it and prescribing Bactrim. No effect, I thought this might be parasite so I took antiparasite. No effect. I went to internist specialists and he prescribed me prescription containing Xanax, another misdiagnosis. I was strongly insisting that this might be parasite, so he asked me to do stool test. The stool test reveals fungal spore and malabsorption, the doctor took a look at the results and paused at results for a moment, then prescribed me Diflucan. At those times I really think my brain was very slow and sluggish, as I can’t even think of asking him a simple question of “why did this happen?” to him, I just took his prescription and left. After some browsing, I couldn’t believe that this illness was something very uncommon, even considered as fake illness. But nevertheless, I took the meds. 20 hours after the first pill, my mood uplifted, I was feeling very healthy, and began to think was this colon/intestinal Candida the cause of all my previous problems. I did life as usual, though still have that unexplained fatigue, some body aches, and mood swings with stimulants.

2 weeks afterwards, the long sleep had progressively went to trouble-maintaining-sleep insomnia. I would always woke up 3-4 hours after night sleep, smoking, doing something, and then resume sleeping after 30 minutes-1 hours. Total sleeping time was still around 10-11 hours, and started feeling ill again. So another elimination was done. I went to the initial dentist and she was surprised I haven’t took the tooth out. I was asking whether the nerve-deaden patch was causing all this, so she checked but the patch was not there. I asked whether this tooth problem can cause all these symptoms but she said she never heard of that before. There was no abscess or swelling, but the tooth does indeed hurted badly when she tapped it lightly. She said this could went to abscess anytime. So the day after, I went to my 2nd-line dentist to have it pulled. Just after the tooth was out, my mood skyrocketed and I felt very healthy. At the same day, the insomnia and fatigue was gone, my stomach gets warm, and the sleeping time I needed daily went back to 6-7 hours. This is where I started reading about CFS.

That was 2 months ago and since that, no more excessive sleeping, always slept 6-7 hours a day, no more fatigue, no more body aches, and darkness/puffiness under my eyes began subsiding. Alos, 3 weeks after the extraction I tried doing the same exercise again, and surprise, my energy is already back, the exercise was nothing hard. The real chronology is more complex than this, and I am thinking of writing a blog post for my illness and how it was cured. But what happened was still puzzling me until now.

However, I’ve learned about CFS and found that 2 symptoms that CFS sufferers usually had was not there; headache and swollen glands. I was never having any headache whatsoever during the period. Also, no noticable swollen glands.

Brahms

Polina

Hey Brahms! can u pls tell me if u had a tooth pain all that time? my CFS coinsided with problems with teeth and I wonder if that is the case. Would be very very helpful and will mean u didnt suffer for nothing;)

Brenda

May 15, 2017 at 11:56 pm -

Hi Polina and Brahms,
I just wanted to say that after months of suffering incredible daily fatigue and cognitive issues (and then, after it progressed and worsened, also experiencing swollen lymph nodes in my neck, and pain near certain teeth and also signs of infection – like foul odours near certain teeth), I saw an oral surgeon who said that issues with my wisdom teeth *might* be contributing to this. I just had them removed (all 4, 3 of which were quite impacted – my panoramic X-ray looked absolutely atrocious) only 3 days ago, so I am still in recovery. But I have the feeling that once I fully recover from the surgery, my fatigue issues will improve. I will keep you posted, but I will say one thing to anyone who suffers from fibro and/or CFS: be sure to look after your oral health and get anything checked out with a dentist if you have any concerns.
It’s a shame there isn’t much research about oral health and CFS/fibro, but I hope one day there will be.
Wishing everyone here the best.

Hi, just thought I would put the autonomic reboot playlist link here. When Jade got her procedure, recovery happened on the operating table. She was talking so much that the nurse told her to stay quiet. But then she had a reaction to the anesthetic and she was very sick. I thought I had made a terrible mistake. Then we did her balance tests again and suddenly PERFECT! and reflexes came back in her feet and (even though she had surgery) she was a totally “new” person the next day. It was the nearest thing to a miracle that I have ever seen. https://www.youtube.com/playlist?list=PLkzXlmAwZTZfQ01RnN-8Ip5lUz0HrNWzN

Hi. I am excited about this research. I had vagus nerve damage of unknown origin. My cough was so severe I had to be hospitalized. My complaints and (mis) diagnosis’s are so lengthy. I was given every RX and every wrong diagnosis for most of my life.

The culprit – found many years later was due to LIVER FLUKES and SCHISTOSOMIASIS and PARASITES. I did however test positive for E. Barr and other viruses. There is such a huge overlap. Visit my Facebook – Parasites in Humans

Alyssa

Alexandra

I feel as though I’ve been battling to solve a Rubic cube for 40 years, and just as I start to make sense of my condition, two pieces of research (this, and the recent VALGANCICLOVIR trial at Sandford, California), confirm all my own theories. I contracted ME at Art School about 40 years ago, but wasn’t properly diagnosed for 20. (I know two other people who got it at the same time). About 30 years ago I developed an intensely itchy skin condition on my back, arms and legs. This too was misdiagnosed for years, but I now know it to be NODULAR PRURIGO (over production of white blood cells). I twice suggested to doctors that it might be caused by a chronic form of HERPES ZOSTER, because of its obvious linear tracks across my shoulders, which 5 years ago also spread to the cranial nerve on my scalp. This idea was rejected by the professionals, and it was my own internet research that finally tracked down info on HHV6A. UK doctors seem to be blissfully unaware of its existance. This was the first time I confirmed any link between the ME and my two skin conditions – I also have GRANULOMA ANNULARE around my flanks and thighs (over production of T cells). I persuaded my dermatologist and GP to prescribe ACICLOVIR (anti-viral), three months ago. Only small improvements in skin so far, no significant difference to ME symptoms yet; but when I found out about the Vagus nerve theory, I knew I was on the right track because for the last 5 years I’ve also been having VASOVAGAL SYNCOPE attacks (collapsing with floppy muscles, unable to articulate speech). All I need now it a remedy! And by some kind of serendipity, my own test of ACICLOVIR has run synchronously with that of VALGANCICLOVIR at Sandford. Unfortunately, this drug is so expensive in the UK, that it can only be prescribed for very short periods for acute conditions. But at least I can now see a light at the end of the tunnel.

valentina64

VanElzakker’s theory is interesting but if the Vegas nerve is responsible, I would expect to see disruption in breathing rates similar to the heart rate and so far I have yet to read about a single person with that issue in 20 years of digging.

Cort Johnson

Van Elzakker’s theory is not necessarily associated with the ANS. He more believes, if I have it right, that the immune signals being sent to the brain are responsible. Different nerve fibers in the vagus nerve transmit different signals.

Martin

I’ve suffered from multiple Autonomic Dysfunction (digestion, sweat, heart rate, blood pressure, blurry eyes, etc) since my HSV 2 infection. I feel the virus causing issues with the vagus nerve could definitely be a factor. The question is what to do for this very debilitating condition.

Angie

I recently tested positive for ebv, but it was not a new infection but a reactivated. My levels were over 600. Since then I’ve had a constant inner trembling tgat began in my right arm and has now invaded most of my body including my head. Anyone think this could be a result of ebv virus affecting vagus nerve?

Ann

Angie Through almost 40 years trying to fix myself I have learned that the Myofascia is affected by toxins which causes a hardening, glued together of the fascia. When the myofascia is triggered by a toxic reaction it triggers the vegas nerve which causes the right side (in my case) jerking and can lead to a seizure It also travels to my head and behind right eye.. If you are taking medication for the virus, this could be responsible for this episode. This disease is caused by the gene GSTM1, which is absent. The virus is incidental.

valentina64

Lyme bacteria elicits an immune response in the body that causes it to attack itself. This often results in old, dormant viruses like EBV (mono) becoming reactivated.

Given your re-activated EBV, coupled with the inner trembling in your right arm that has since emanated to the rest of your body, including your head, I would seriously consider being evaluated and tested by a competent Lyme specialist, known as an LLMD. (not someone you can simply look up, due to the large amount of political controversy surrounding Lyme disease, its diagnosis and treatment, as well as the vital role these doctors play in the saving of lives. You need to ask around and find one by word of mouth or from support pages.)

One of the thousands of ways Lyme damages the body is to cause inflammation/infection of the vagus nerve, which affects breathing, heart rate, and digestion, to name just a few. Lyme is primarily a disease of the brain and central nervous system, so your symptoms could very well fall directly in line with a Lyme diagnosis.

Martin

Sam Mitchell

Has anyone read Anthony William’s book Medical Medium? He explains how the body is affect by the EBV and uncovers the root cause of a tons of “mystery illnesses”!! It just came out and confirms what Michael Van Elzakker’s is saying.

Trevor

Yep, I have read it. The author has interesting information but it is all fairly common advice like eat vegan and take supplements. We all know the vegan diet is extremely well researched and can do miraculous things like cure diabetes and cancer. However, the author talks to spirits and that makes him unreliable in my book.

Dawn

Hi Sam – yes I’ve read it and have been using the recommended herbs, foods, and supplements for over a month now. It’s working! My levels of EBV back in the fall of 2015 were high, now they are significantly lowered. The anti-viral herbs definitely work and my symptoms have diminished significantly, some gone altogether. I’ve been able to stop my decades of taking thyroid medication, as well. That is amazing in itself. I don’t care where the source of his information is derived, it only matters whether it works or not. I was buying many supplements prior just trying to tackle symptoms, it was tiring and had random success with alleviating some symptoms, but never fully. Anthony’s targeted foods and herbs are working and none of my holistic doctors have been able to get near the results that I’m obtaining now. Too bad for others reluctant to try healthy herbal solutions. We are prisoners of our own beliefs.

valentina64

The researchers are missing a key component that would solve everything covered in the article – Lyme Disease. There is no such thing as CFS or FM – period. Lyme Disease frequently causes an infection/inflammation of the vagus nerve and other cranial nerves. Lyme is known for causing the reactivation of dormant viruses.

Christine Finlay

I found this very interesting for just today I came across Glial Cells…mentioned in Binswanger disease, when following Vascular dementia (my mother has and was once told she had ME/cfs) My own E.M.E. symptoms began to improve when a doctor who told me it was “Chemical poisoning” explained how the brain & spinal fluid has a mechanism to shutdown from allowing the chemicals through – but also stopped the nutrients from getting through….he strove to reverse that & I improved.
Fascinating I hope you continue as I believe you’re onto something that could solve this for many.

Trevor

Rodent and other animal studies are not reliable and valid research methods for a human condition. Get with the modern age and stop wasting taxpayer dollars on animal tests that cause immense suffering. Taxes should not pay for torture.

Cort Johnson

I don’t know. Some cytokine blocking medications can be very helpful in immune diseases – they are expensive, though, and hard to get approved for. Hopefully we’ll know much more about glial cells and ME/CFS/FM in the next year or so.

Mark

Going with the virus hiding dormant within the Vagus nerve hypothesis; as nerves conduct electricity very well could someone take a anti-viral and then zap the vagus with some kind of electricity perhaps via acupuncture so that the virus would vacate the vagus long enough for the anti-viral to work? Alternatively laser light?

steve

Well after 23 years I accidentally stumbled on this possibility after a recently developed infection…..a UTI and Prostatitis with a very high PSA …..my doc prescribed CIPRO……..which I figured I wouldn’t be able to take……well after about 3-4 days of taking this drug I felt my UTI improving…..but also an overall well being started to creep in and after 2 weeks I felt better than I have for years…….I had been suspecting I was carrying an infection of somesort but didnt have a clue as to what……this was after researching my ridiculously high cholesterol particles…(NMR lipo profile) but I should add that I have ZERO heart disease (my doc was so flipped out by my numbers he had me have a CT scan of my heart and brain……now hes all ….but but but lol……cholesterol and heart disease? not as simple as that.So I have continued to improve and can now even take amino acid supplements and vit D ….the Bs etc…..I would react immediately with any medication or supplementation in the past. There is so much to this story that I have left out……..

Osla

Fascinating article. I’ve been dealing with this crap since 9:00 a.m. one morning in October 2003. It was preceded by a bout with parvovirus B19 and a dental infection that I didn’t know about that had reached the bone thanks to some poor dental work. I have a medical background and have tried so many things (because we all know doctors here in the US aren’t going to do much for us).

I’m currently exploring Leslie Simpson’s theories on Ramsay’s Disease (aka ME) concerning misshapen red blood cells with increased cell wall rigidity and decreased deformability (which makes it more difficult for RBCs to get through the capillaries to exchange oxygen and metabolic waste). So I’ve been taking steps to increase RBC deformability and filterability by taking supplements as well as striving to decrease blood viscosity. Part of the theory is that people (mostly women) who have smaller blood vessels are most susceptible–their tissues are not getting enough oxygen and the build up of waste products like lactic acid cause pain.

It’s still early to tell (it’s only been a week or so) but the fact that I’ve been so much worse since a hysterectomy in July 2016 supports the whole theory: having a menstrual cycle gives one 80% more new RBCs and 85% fewer old RBCs. Newer RBCs are much more flexible while older RBCs are more fragile (older RBCs lead to more debris and less nitric oxide, both of which increase blood viscosity).

I wanted to share that because, if you’re like me, you want to read anything you can about any ideas or breakthroughs. I’m interested to see more research regarding vagus nerve infection. Thanks for posting!

jamex

Jacob

I hope something comes of this study ive lost my whole life due to rapid gastric emptying started in 6th grade and has only been getting worse only recently did the docs give up and drop this theory on me telling me its all in my head and I just need anxiety medicine one meal a day and vomiting always is a literal hell with no end in sight I dont think I can make it through life with this only getting worse year by year hopefully something will come from this study

Jacob

I hope something comes of this study ive lost my whole life due to rapid gastric emptying started in 6th grade and has only been getting worse only recently did the docs give up and drop this theory on me telling me its all in my head and I just need anxiety medicine one meal a day and vomiting always is a literal hell with no end in sight I dont think I can make it through life with this only getting worse year by year hopefully something will come from this study

Martin Cleypool

Hi Cort,
I had a paraspinal bacterial infection in 2014 which left me with dessicated C3 & C4 vertebrae. In late 2016 got HSV2 and my Dysautonomia started and hasn’t stopped. I now have complete failure… zero gastric acid, no motility, syncope, severe ortho hypo, urinary issues, thermo regulatory probs, and will likely not make it much longer. I wish there was a neck surgery that could be done to repair vagus nerve damage. If you want to know any details to help your research feel free to call me. c(770)312-4843